About involvement and engagement

This page clarifies some of the key terminology and conventions used throughout the Toolkit

The terminology used in this area can be confusing. We have adopted the definitions below to describe the three distinct ways that researchers and research organisations interact with consumers and the community:

Involvement is where consumers and community representatives actively work with researchers and research organisations to help shape decisions about health research priorities, policy and practice.

Some examples of consumer involvement include:

defining research questions

identifying outcomes of interest

helping design and deliver the research projects

improving the content and readability of participant information

making trials more attractive to potential participants

analysing research findings

ensuring a balanced assessment of research findings

helping design and deliver further involvement/engagement activities

Engagement is where information and knowledge about research is shared with consumers and the community so that they are better informed on why, how, where and by whom research is conducted.

Engagement is about creating a dialogue with consumers and the community to improve research literacy and increase trial awareness to encourage trial participation as a routine care option.

Some examples of consumer engagement include:

sharing research findings

consumer training on product or protocol development

research open days

sharing information through public talks and lectures

using social media to highlight trials/trial topics

Clinical trials are conducted for many reasons. For example, they may:

test whether new treatments are better than existing ones,

test whether existing treatments used for a disease condition are effective in other conditions or patient populations

compare the existing treatments used for a disease condition to find out which work best.

Participation is where patients or healthy volunteers take part in clinical trials.

Clinical research aims to discover whether proposed new treatments are better than existing ones or alternatively, which of a number of existing treatments commonly used for a disease condition is best.

Some examples of consumer participation include:

being recruited to take part in a clinical trial

completing a questionnaire or attending a discussion group as part of a research study

providing data or tissue that is analysed as part of a research study

Many terms are used to describe those who partner with researchers and research organisations to conduct clinical research. We use the following:

Consumers: Patients and potential patients, carers, and people who use health care services

Community: A group of people sharing a common interest (e.g. cultural, social, political, health, economic interests) but not necessarily a particular geographic association. Different types of communities are likely to have different perspectives and approaches to their involvement in research.